Feeling Down in the Dumps

Primary progressive MS
1

Hi all, some of you know I’ve had 3 nasty infections since February. 2 are clearing, the 3rd is worsening. I’ve felt rough & fed up. My mask of Mrs Positive is slipping more often.

The gp has been supportive, their Snr Nurse brilliant (her dad has ppms). Yet I feel cross at the amount of meds I take each day, around 12 on script plus 4 health benefit vits. No-one is removing any repeat meds & this surely can’t be good.

I had to return to hospital last week due to pain & very high b.p. So now I’ve had B.P. tablets added to my repeat script.

When in hospital, there was a lovely lady, Jan, with SPMS who could only move one of her arms, speak a little and had vision only from 1 eye. Jan laughed with me & visitors and slid down her bed, having to ask my sister to press the nurse call button so she could be lifted back in her seating position. She was spoon fed & needed someone to put her baby cup with a lip to drink sips.

I can’t get Jan out of my mind & keep thinking her position is my future, I know I’m losing hope. It’s not depression, just the continuous fight to carry on. I’d never end my life but in all honesty, I can’t currently see what use I am to my family & friends. I’m just someone who relies on them! Despite all of the platitudes, I know I’m already an extra load on my hubby & daughter shoulders, I really can’t bear the thought of being bedridden and a total burden! I’m SO Sorry if my thoughts will affect those who are bedridden like Jan. I really don’t want to be dismissive of how lucky I am being able to get out and about in my chair now & again.

Sorry to ramble & moan when there’s many much worse off, but I can’t release these feelings to my family or the few friends who remain my friends. I held a good job in my career as a Consultant to financial advisors, made many customers better off with their investments. I became a Consultant investigator of rogue financial advisors, a new company car every 4 months based on high mileage I used to regularly fly to Glasgow on business staying in good hotels. I remember my lovely childhood and most things up to age 50. Then it’s just been downhill with no hope.

Chrissie x

1 Like
2

Hello Crisseie52 trust me i understand you but as my husband tells me he loves me it is the same with your family they love you I have just my husband and 2 daughters and no friends at least you have family and friends so be thankfull for that sending lots of cyber hug.

Bea

3

Hi Chrissie, Eight years ago I lost my home to the bank, became a bankrupt and was diagnosed with PPMS. Now I have less possessions I feel free to concentrate on the important things in life. Like being a better husband. Everything I ever did for a living has become meaningless. Best wishes, Anthony

3 Likes
4

Hi A.D. I’m so sorry for how this cruel disease has affected you Anthony, and your marvellous wife. I completely agree material things are unimportant, if not insignificant. I accepted leaving work in 2004 due to symptoms. Eventually MS was diagnosed in 2011 & PPMS confirmed in 2016. I’m feeling sorry for myself, especially when there are thousands worse off. One minute I’m at the top of my game, now I’m dependent on others.

I’ve always been one who does, thought on my feet & found solutions to any difficult problem. Now I forget the day, date and thousands of just a moment ago. It takes me over 2 weeks to read a book & follow the story by re-reading the previous chapter. Indeed I could read the same book several times.

My hubby is Mr Wonderful, does all cooking, driving & walks our dog 3 times daily. He collects my scripts & meds each month & does all shopping. His daily routine is boring him & I feel so guilty. He often states “same old routine for me today” .

I would happily live in a retirement complex, so my hubby can enjoy his life. As expected, he won’t entertain the idea. I miss ‘me’, the strong, independent woman, competent and efficient wife, mum, Gran, friend & employee. It can only get worse, like the lady I met in hospital last month. I’m really struggling to find anything positive in my life. I feel like I’m imprisoned and useless if I try to do anything.

Thanks for your patience in reading my moans.

Chrissie x

1 Like
5

Aww Chrissy, I feel like crying for you . I get overwhelmed too, it’s hard to stay positive all of the time . I often imagine what life would be like without the wheelchair and tiredness and disability that has affected me and has a big impact on the children and Lee. The fact is we can’t change this but we can change our outlook. We can still fulfill dreams even if we have to make new ones . CBT really helped me come to terms and learn to appreciate what I can still do . Ive started doing voluntary work on Saturday mornings, it’s helped me to feel useful again , I can’t do much but I now feel in control again and not needy …I hated feeling needy, it made me feel as if I was a drain on society and my family . Now I feel as if I have a reason for being here and although I still get depressed I’ve got my sparkle back. Please remember you are important and just because you have a disability doesn’t mean you’ve lost your wonderful personality. You are still the same person your husband fell in love with , and still a good friend to the people who love you. Michelle and Frazer xx

1 Like
6

Hello Chrissie.

I’m sad to hear you’re feeling so down. I’ve had a terrible start to the year in other ways.

Firstly, don’t apologise for being negative. This is just the place to vent your feelings and fears. I try not to think of the future or future deterioration but your experience with Jan must have given you a possible vision of how things can become. But remember it may well not be your future. And she was still able to laugh.

Think of the support you have had on here and of what you get at home.

Moods can go up as well as down. (As in good financial advice with investments!)

Best wishes, Steve.

7

Hi Chrissie,

You said that, you’ve always been one who does, thought on your feet & found solutions to difficult problems. You have an unexpected set of new problems. that is the only difference. You’re not moaning; you are just trying to get used to your new life. it’s just not the one you were planning for.

I was 55 when my life changed forever and I like to think I am the same sort of person as before. So, I looked at the life I have now and have tried to apply that same attitude to today’s problems and, in that way, make me feel that I am in control, not my MS.

I’m as independent (bloody minded) as I’ve ever been. I just don’t walk very well (and I have to piss into a bag).

Regards,

Anthony

Tip: Never wear light coloured trousers.

8

Hi Chrissie

It does sound like life is a lot of doom and gloom for you at the moment. Don’t feel guilty about venting on here, it makes no difference who is worse off than who, we all at times need an outlet for our feelings and this is the place to come for support.

From your other posts, I admit I hadn’t picked up your lack of positivity at the present time. So you’ve either sustained an excellent public ‘face’, or we’ve actually been entertaining you. If the latter is the case, then I’m very glad. If it’s the former, then maybe you need to let the mask slip a bit more, and let us try and help.

It is shocking and frightening to think about people like Jan. And to worry ourselves silly that it will one day be us. But Jans’ physical condition is not necessarily the outcome any of our futures, regardless of our current state. Honestly, maybe a heart attack or stroke will carry you off before you reach that level of disability!!

But seriously, you know that if you shared the feelings you have expressed in your post with your husband and daughter, they would probably be horrified. They will want to raise you from your ‘depression’, without thinking that actually it’s warranted.

We are encouraged to feel positive regardless of our physical disability and prognosis. And yet the truth we see is that some of us will suffer undignified and unpleasant futures.

As for the missing the ‘old you’, there are many of us like that. I’ve been a reader all my life and have to go back a couple of chapters each day to be able to follow the plot (just about, I frequently forget people and events in the book I’m reading). I can re-read the same book a few months or even weeks later and don’t remember it. People often minimise this problem, they seem to think that failing to remember the plot of a novel is unimportant. But to me it’s massively important. I can’t watch TV anymore as plot lines are too convoluted for me to follow, I can’t socialise in crowds as I can’t think in noisy situations and I neglect friends because I forget to contact them; my intellectual life is now this forum. The books that I continue to read, and a friend or two who I email. And that is a very big deal to me. I was a ‘doer’, a thinker, a writer, a trainer, a manager. Now I’m none of that.

I do know that I am important to my husband and some old friends. And I find writing on here gives me a creative outlet and validation as a person with knowledge and experience to share. But I still miss me. And I too worry what will happen as MS continues to rob me of my physical and mental abilities. I personally have made an Advance Directive (aka Living Will) to ensure I am not kept alive in what to me would be an unendurable state. I also reserve the option to consider ending my life if I cannot bear the thought of continuing to live in little more than a carcass, if necessary, travelling abroad to do so.

In the meantime, the best we can do is to ensure we have all the appropriate facilities and assistance to make our lives as good as we can. And part of that is having a loving family around you. Which you have.

Sue

2 Likes
9

Oh Chrissie, I know how you feel. Just last week I was feeling great, I’ve been feeling good for a while. Last week we went to stay at my daughters for a weeks holiday. My daughter and son in law to be were brilliant and they took us out somewhere everyday. We even went up to London for a day because they pushed me everywhere in the wheelchair I really enjoyed myself and wasn’t tired. Now I am back home I feel awful I have no energy whatsoever and my legs feel so weak and I feel really down.

I really hope this will pass soon. I am hoping that it was the fact that I spent so long in the wheelchair that has weakened my legs. The dreaded brain fog is in overdrive as well.

Why is it that a holiday that was supposed to recharge you makes you feel so bad?

Good thing was that hubby got a real break and really enjoyed himself.

Guess I’ll just have to suck it up until it passes.

Hubby has said to book a few days away for my 60th birthday in June but I can’t get any enthusiasm going as I know I’ll feel like shit when I get back.

I feel really guilty venting on here as I still have a good life. I work 16 hours a week and can still walk/ hobble a bit. Not on any meds and usually feel not too bad and could be a lot worse but my positivity has gone a bit this week.

Mags xx

1 Like
10

Oh Chrissie, I totally"get" what you’re saying and how you’re feeling. I attend the ms centre in a nearby town most Wednesdays. Initially it was very daunting. There are people there in various stages, similar to Jan. Wheelchairs like tanks, feeding cups, curled fingers, rolling eyes… It’s so sad that these people were once physically okay. Living a full life.

So was I until almost three years ago, aged 55 I was given the diagnosis. Within eighteen months I need my husband to put on my socks and shoes. I feel I’ve become an old lady overnight, as I shuffle around indoors with a three wheeled walker, no longer upright and striding and totally depending on a wheelchair outside.

My tears sometimes surprise me when they roll down my face. My emotions get overwhelmed. My thoughts spiral out of control, either thinking back to how life was or peering to the imagined future.

Sometimes they cascade and progress to uncontrollable sobs, wracking my body and my poor husband can find no words to comfort me. In previous times when he has tried to, I have snapped and snarled in response. Swearing at the ms and vowing I will not endure the pitiful existence of a half life. I have told him I would end it if things came to that stage. He flatly refuses to respond.

I can only hope today is a better day for you Chrissie. I have no words of comfort or wisdom to offer. I can only say I believe everyone who resonds to you know exactly how you feel for sure. Xx

11

We are all allowed to be pished off Chrissie, life with MS, any illness to be fair, is shit. As we all know it impacts not only us, but our significant others as well (you can tell I worked in the NHS with posh words). Seriously though, where else can you rant if not here? the club with The best members & who actually know where your coming from. I was on BF before, Mick had put up 1 of my favourite motorbikes, I used to have an Kawasaki 125, loved it, bittersweet memory I’ll never ride 1 again. But, I do have a family & large network of friends that do quite like me, they must do otherwise they wouldn’t put up with me. It’s hard when you meet others that are suffering the same as us, we start to ponder on the way it effects them & see ourselves in their shoes. I’m not going to be condescending & say it may never happen to you, truth is it could happen to any of us, if/when it does I personally will worry about it then, here & now is what I deem important, look at Stephen Hawkings, not the best scenario by far, but by God he certainly made the most of what life he had & contributed to the world in a major way. That is not to say I am not suggesting a masters degree in science, but to your family you are the whole universe, MS or not. You shout, swear & moan all you want lovely, it’s allowed xxx

12

Take care out there Chrissie. I never know what to say to people who take medication. It brings back nightmares & the sound of the heart monitor, after a failed suicide. Just had a phone call from a few drunks accusing me of sleeping with my friends wife as a joke. Idiots! My sollution is make a coffee & dive into something creative, because I chose to live alone. There’s always something around the corner. I hope it’s good for you Chrissie. Take it easy out there folks & keep breathing. Terry adapt until…

1 Like
13

Huge THANKS to all for understanding my low mood. A.D, I too pee in a bag, since February, I’ve not been free from infection since. So it means many trips to my G.P & Nurses, no signs of clearing, yet, but I know they’ll clear one day this month or next.

Sue, thanks to you and many others, it IS entertaining here & I chuckle or laugh at the banter, often in a different room to my hubby, who then checks if I’m ok! I think he thinks I’m doing nothing at all but just burst into spontaneous laughter. For t.v. I use the rewind constantly, as I miss something cos I’ve concentrated on something else. So a 30 min programme takes me 70 minutes

My own positivity is often spoken of, when some say “Oh, you poor thing, yet you seem so happy” I always reply “PPMS is what it is, and I accept it because the alternative ain’t great”

All advice you’ve posted here has kicked me up my bottom to stop dwelling on what ifs. Seeing Jan was a shock but I know all of us are different. I could be killed by a runaway vehicle one day. I’ve enjoyed reading all your advice and I will adapt my problem solving when I can concentrate enough. Indeed, as the wise A.D wrote, it really is a matter of adapting to the different circumstances that we’d planned.

I’m glad I opened up with my fears, and each of you lovely people understanding. There’s a fab lot of MS members in here, thank God I found you.

Lotsaluv, Chrissie x

14

Pissing into a bag is freedom.

I can be sitting in my art class, intent on my tutor’s words and, secretly, I’m dribbling down my left leg.

I don’t miss bits of a film, as I sit on the sofa, secretly dribbling down my left leg.

I can be sitting on my scooter trundling down the High Street and, secretly, I 'm having a piss.

And nobody knows that I’m taking the piss.

1 Like
15

Oh A.D. your post has brought laughter & I recalled Billy Connolly describing the benefits of drinking pints whilst eyeing up the lasses joining them without a care in the world until the bagged leg became too heavy. Always a silver lining eh?

Thanks A.D (you’re a good guy at heart, but I’ll keep it secret) x

Chrissie

16

A D s post made me laugh too there s always some perks to being disabled . I always think it’s a perk not having to look for a seat …ive always got one stuck to my bum. Michelle and Frazer xx